My last two days in New York were mainly filled with doctor’s appointments to be sure that I had recovered enough to drive home. There were a few issues, but they felt they could be managed from home. This photo is at the surgeon’s office:
This is Marissa, a friend who also has CCHS! We have known each other online for a long time, but had never met in real life before. There are only about 1200 people (mostly children) in the world who are diagnosed, so it is pretty exciting to meet another adult with CCHS in person! Marissa has pacers too and was able to get her trach out like I hope to do:
This is Linda, Marissa’s mom! She brought a bunch of lovely vegan and gluten free snacks with her, and we sat and chatted in the hospital lobby for a couple of hours. (My mom was there too, but doesn’t like her photo taken.) It was definitely a highlight of the trip to get to see them!
We went back to the hotel for one more night and got packed up. The next day, my mom loaded the van. I went to one more doctor’s appointment, and we were ready to leave!
It takes a lot of supplies and equipment to travel on a ventilator. Once I am fully paced and my trach is out, everything I need will fit in a backpack!
We stopped at by CHLOE and got a takeout dinner on our way out of town. I wanted to try the Classic Burger:
We also ordered the Kale Artichoke Dip:
And the Avocado Pesto Pasta:
The Classic Burger was pretty good, but the texture of the patty was not as firm as the bean burger on the Guac Burger. Also, the bun on the Classic Burger got a little soggy from the ketchup that comes on it. My advice is to either get the amazing Guac Burger, or to order the Classic Burger without the ketchup. There is a dispenser with both the chipotle aioli and beetroot ketchup, so get some of each to have on the side.
The Kale Artichoke Dip was really good! The flavors were nicely balanced and the texture was perfect. We didn’t finish it all and reheated the leftovers the next day. I spread it out on foil, sprinkled it with my vegan parmesan, and broiled it until the top was golden brown. We liked it even better this way!
Both my mom and I thought the Avocado Pesto Pasta was too strong in basil flavor and that there was too much sauce for the amount of pasta. That is just our personal preference, though, and others will feel differently. I do not recommend reheating this dish, as the gluten free pasta broke up into small pieces and didn’t return to the good texture it had when fresh.
I liked our menu choices on our first visit to by CHLOE better than on this one, but the food was still good, the staff friendly, and the environment lively. I will definitely go back when we are next in New York!
We were pretty late leaving New York because of that last appointment, and didn’t get home until five in the morning. I am really glad the surgery is over, and am very excited for what the future will bring!
I’ll be back to regular blog content after this post. I hope you enjoyed the NYC restaurant reviews, meeting some of my friends, and getting to know me a little better. Be sure to check back later tonight to see my recipe for Chick’n Fried Tofu – its great both hot and cold!